good news I think CT SCAN clear no mets and latest CEA down 1 from 17 to 16 Yippeee!!!!!!!!
9 am intravenous iv c and i get the cea and full bloods results from last friday.
now my cea is down to 16 from 17 over the period of a week while i was away on holidays.
note for 3 days of that period i did iv c 60,000 ui and artemisinin.
nothing conclusive but still better than a doubling. maybe just maybe the alternatives are working. i have hit them very dam hard if i say so myself.
will wait and note cea over the next month at weekly intervals. going to continue iv c and artemisinin and the other supplements i am doing.
then i do the low dose triple phase ct at 12 noon of chest , abdo, pelvis. No mets found. so unless its in the brain , i am met free on another scan at least. this is great i think! this is the only low dose ct scanner in sydney 8 msev, which is about half what i used to get exposed to.
so then at 4pm with results i see top onc for 3rd opinion, with my box of well organised records. its the most detailed and intensive 90 minute consult. we went over all the regime, the history and the plan. i made a couple of pages of notes.
as my main onc is not back until 23 jan, i have used my time well. i have learned so much.
onc 3 is taking my case to the radiologists review meeting, i bit of liquid on the liver and a small cyst. he also wants me to see surgeon for another scope asap. i said funny i am seeing him tomorrow 8.30am.
since the 21november11 the day the recurrence became a distinct possibility, i have generated 3 folders of research and records.
i will use both onc's , i like the focus, onc 3 wants to see me in 2 weeks after the scope and more tests,, to see how i go.
he focus's on colorectal big time, was apart of the cimetidine pilot study, likes it, he likes psk, and does not like iv c, does not like rgcc molecular.
onc 3 is a great resource. out of pocket $60 for the best 90 minutes so far.
so tomorrow 8.30 surgeon in the city.
11.30 am liver ultrasound.
2.15 redo live blood and clot report analysis.
somewhewre in between i need 2 hours for iv c.
being healthy and focused is geting the respect of the onc's.
the scans, the reports, the bloods, the supplements. everything is documented at my finger tips. i feel confident know one else has approach these onc's in such a patient focused determined manner. if my crazy alternative regime works, i will have dragged reluctantly three top sydney onc along for the cea ride. i just hope it does, if not the fall back is whatever the onc's determine.
to some extent i am an expert on me, my physiology. this is an area where we can bring clarity to the discussions. onc 3 was very very interested in my bm's, I may have inflamatory bowle disease, which i just found out my mother has. it was onc 3 questioning that helped me piece this part of the puzzle together.
just an update, still got 2 juices in today and healthy food.
hugs,
Pete
ps given my health, i am almost on the point of insisting on chemo to kill any met. the clinical argument is the cea rise may not be a tumour and you would suffer chemo side effects for no benefit. given my health and age i almost consider doing chemo as an aggressive move, even before any mets have landed. i will pursue somewhat non conventional aggressive line with all the onc's. so yes here is an alternative junkie insisting on the most effective chemo. ironically this is what the german clinics are advocating as well.
this is really just like stage 3 adjuvantant chemo, watchful waiting misses the window. i wonder if clincial studies have been done with regard to this strategy for crc's whose cea has just started to rise.
Comments
-
Just to Consider....
Pete
I used to be from the school of thought that you bang chemo and do all that you can do, especially early in the fight.
This past year, I sat down with my onc to talk about chemo and its role in our fights...his take was if there is no visible tumor to fight, then systemically reintroducing chemo could do more damage than good.
While the patient's thought is flood the body trying to 'kill' the rogue cells...this may not be the most prudent approach as it is akin to finding a needle in the haystack.
Not only is there a strong chance that all cells will not be eradicated...but sucking down the big chemo now does have the propensity to desensitize the cancer cells to the chemo and at some point could make the chemo less effective or stop working altogether, as the cells can become resistant to the treatment.
It's a calculated move either way....my onc thinks it's better to keep the big gun in the holster until it's time to pull it out and draw...
The side effects are a known cause, but of more concern is the fact that the reintroduction of chemo might not work - and if your body stops responding to it, you would lose that option for the future.
Just something to think about....as I said "6 one way - half a dozen the other."
Good luck with whichever route you decide to take.
-Craig0 -
Greqt news. I am like you. I
Greqt news. I am like you. I have been battling this beast for 6 years. I am an exercise and health food fanatic but I still believe in doing the most aggressive treatments available as well.0 -
Great news Pete, keep up the
Great news Pete, keep up the good work! :-)0 -
considering your considerationSundanceh said:Just to Consider....
Pete
I used to be from the school of thought that you bang chemo and do all that you can do, especially early in the fight.
This past year, I sat down with my onc to talk about chemo and its role in our fights...his take was if there is no visible tumor to fight, then systemically reintroducing chemo could do more damage than good.
While the patient's thought is flood the body trying to 'kill' the rogue cells...this may not be the most prudent approach as it is akin to finding a needle in the haystack.
Not only is there a strong chance that all cells will not be eradicated...but sucking down the big chemo now does have the propensity to desensitize the cancer cells to the chemo and at some point could make the chemo less effective or stop working altogether, as the cells can become resistant to the treatment.
It's a calculated move either way....my onc thinks it's better to keep the big gun in the holster until it's time to pull it out and draw...
The side effects are a known cause, but of more concern is the fact that the reintroduction of chemo might not work - and if your body stops responding to it, you would lose that option for the future.
Just something to think about....as I said "6 one way - half a dozen the other."
Good luck with whichever route you decide to take.
-Craig
lets toss the coin,
you know where this argument may end don't you,
i will give you my take,
i completely agree with you,
lets save the big guns for when they are needed and the consequential damage to our body.
at some level the chemo, the supplements etc are all foriegn chemicals we are adding to our bodies. they can all do harm and help.
so whats my point,
the futility of fighting crc, this god dam curse from hell.
but fight we must,
sadly for some of us a rising cea may mean the beginning of stage 4, whatever that means.
when my cea was at 66, i was a mess, anyway throwing everything i know and can find at is all i can do.
my current health and strength, purchased with lots of effort and sacrifice i don't want to waste it prematurely. the irony of the big gun chemo leaving a few resistant crc's to grow back is scary to say the least.
lite chemo and hyperthermia and some immune support like the germans are offering sounded complelling.
great feedback graig, sincere thanks.
hugs,
Pete0 -
More tests liver ultrasound tomorrow 8am and then pet real soonkaren40 said:Hi Pete
I'd give some thought to what Craig had to say on jumping the gun when it comes to starting chemo. I believe he has brought up some good points. Praying that you see a continual decrease in your CEA.
Karen
where did this little **** tumour land, i want to find it as early as possible and have it cut to pieces.
keeping the faith! what's the point of being glum.
they can burry me one day with a frown, until then i will keep on enjoying life and smiling.
my 10 year old daughter gave me my artesiane 80 imi tonight. i am going to sleep while the iron in my cancer cells attracks the artesiane.
thanks for the kind comments and support.
hugs,
Pete0 -
Keep us posted-
You are one tough dude, and continue to be an inspiration to the rest of us! Hugs and please keep it up! Ann0 -
Wish I would have had this advice...Sundanceh said:Just to Consider....
Pete
I used to be from the school of thought that you bang chemo and do all that you can do, especially early in the fight.
This past year, I sat down with my onc to talk about chemo and its role in our fights...his take was if there is no visible tumor to fight, then systemically reintroducing chemo could do more damage than good.
While the patient's thought is flood the body trying to 'kill' the rogue cells...this may not be the most prudent approach as it is akin to finding a needle in the haystack.
Not only is there a strong chance that all cells will not be eradicated...but sucking down the big chemo now does have the propensity to desensitize the cancer cells to the chemo and at some point could make the chemo less effective or stop working altogether, as the cells can become resistant to the treatment.
It's a calculated move either way....my onc thinks it's better to keep the big gun in the holster until it's time to pull it out and draw...
The side effects are a known cause, but of more concern is the fact that the reintroduction of chemo might not work - and if your body stops responding to it, you would lose that option for the future.
Just something to think about....as I said "6 one way - half a dozen the other."
Good luck with whichever route you decide to take.
-Craig
before I did chemo. Two go-rounds with no visible tumors, and no useful results either. Would have happily skipped all the side effects.0 -
thanks annannalexandria said:Keep us posted-
You are one tough dude, and continue to be an inspiration to the rest of us! Hugs and please keep it up! Ann
Just trying to ne a match for this dam crc, its a pretty tough foe.
I put up a post on my blog with a good photo that tells tissue story.
Hugs,
Pete0 -
Petepete43lost_at_sea said:thanks ann
Just trying to ne a match for this dam crc, its a pretty tough foe.
I put up a post on my blog with a good photo that tells tissue story.
Hugs,
Pete
Hi, Pete
WOW - is all I can say about everything you are doing to fight this horible monster.
I was so happy to see that your cea went down one.
Keep up the fight.
I am fighting for my husband just as much. I have spent hours and hours searching the net and
reading quite a few books. I am interested in food and nutrition....building up the immune system.
Not trying everything you have....but hoping we can win this battle.
Wishing you the best.
Linda0 -
thanks gail and lindatootsie1 said:Praying for you
Praying the best answer for you can be found.
*hugs*
Gail
I appreciate the kind thoughts.
hugs,
Pete0 -
My prayers are with you Pete!pete43lost_at_sea said:thanks gail and linda
I appreciate the kind thoughts.
hugs,
Pete
Have a big hug!0 -
and mine with you my friendpepebcn said:My prayers are with you Pete!
Have a big hug!
dear pepe,
been so busy getting tests and iv c , its a challenge to get exercise.
mowed the backyard today. we better keep the exercise post ticking over.
hugs,
Pete0 -
oh ketziahketziah35 said:Pete
What is Kras mutant? Can someone tell me?
mutant kras means targetted therapies like erbitux etc are not effeciacious. they don't work.
for this means surgery surgery surgery.
aggressive surgery, radio etc etc etc
my fall back contigencies are limited, so effectively i am playing the the crc game without
the erbitux chemo fallback.
it means shoot for cure if your a mutant.
just my understanding.
google kras, mutant. you need your tumour genetically profiled to see if this is effective
hugs,
Pete
ps other may answer better0 -
oh ketziahketziah35 said:Pete
What is Kras mutant? Can someone tell me?
mutant kras means targetted therapies like erbitux etc are not effeciacious. they don't work.
for this means surgery surgery surgery.
aggressive surgery, radio etc etc etc
my fall back contigencies are limited, so effectively i am playing the the crc game without
the erbitux chemo fallback.
it means shoot for cure if your a mutant.
just my understanding.
google kras, mutant. you need your tumour genetically profiled to see if this is effective
hugs,
Pete
ps other may answer better0
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